Objective:

To evaluate racial and ethnic disparities in time to HD diagnosis and level of disability at the time of enrollment in ENROLL HD.

Background:

Given well-documented racial and ethnic disparities in access to care for neurological conditions, we were interested in evaluating disparities in access to HD care among minoritized communities in North America.

Design/Methods:

We used multivariate linear regression models to evaluate differences in the time from the age of symptom onset to the age of HD diagnosis. Multivariate models adjusted for age, sex, CAG repeat length, type of symptom at disease onset, education, employment status, and geographic location. To evaluate the level of disability, we analyzed racial and ethnic differences in the total functional capacity score (TFC) during the baseline visit. Multivariate linear regression models included age, sex, CAG repeat length, level of education, and geographic location.

Results:

Of 4717 patients in the North America region with genetically confirmed HD, 10% identified as an ethnicity other than white. The average time to HD diagnosis was 3.78 years, and the average TFC score was 10.22, consistent with Early Manifest HD Stage II. The relationship between race and ethnicity and delays in diagnosis was mostly mediated by the type of symptom at disease onset, with patients with psychiatric symptoms being diagnosed 2.43-years later than those with motor symptoms (p<0.001). Black patients received an HD diagnosis 4.94 years after symptom onset, 1 year later than White Non-Hispanic patients (p=0.018). Black and Asian patients had higher disability at the time of enrollment, with TFC scores of 9.22 (p<0.001) and 9.39 (p=0.067), respectively.

Conclusions:

Black patients with HD experience delays in HD diagnosis and enter ENROLL-HD with higher disability than other racial/ethnic groups. Additional HD studies are needed to understand the causes for delays in HD diagnosis and higher disability, and to develop interventions to reduce disparities.